Artist Cecelia Johnson was diagnosed with multiple sclerosis (MS) at the age of 22. I recently happened upon a video she posted titled, “Invisible Symptoms of MS.” Imagine my surprise at hearing her read my own words — words originally posted right here on Care2. Her quiet, heartfelt reading brought those words to life.
Cecelia concludes by saying, “I’ve tried to put it into my own words, but…that’s pretty damn good.” You’re right, Cecelia, it was — and you brought it home more than mere words could.
As if to underscore the point, Cecelia looks quite good in the year-old video, but her battle with MS has not been an easy one. I reached out to see how she’s doing now.
“It’s very hot here in Houston, so I have to stay indoors. [Heat exacerbates symptoms of MS]. I’m an artist and I live and work in my residence/studio. Being an artist has kept me alive and I found a way to work with this ever-changing disease — at least for now. But I pace myself. I’ve slowed down quite a bit and stopped trying to force round pegs into square holes. Though I’m afflicted, I’m not a victim.”
Her YouTube page is populated with videos about life with MS. “I’m exposing everything about MS that we hate to talk about and people don’t want to hear,” says Cecelia. “I’m researching and reading every day, connecting dots and my different symptoms. Stem cells have been the only effective treatment for my ‘MS.’ MS is simply a symptom meaning ‘multiple lesions.’
“I’m putting pieces together to try to improve my quality of life. It’s a daily battle and I believe in pointing and yelling at the elephant in any room. Ann’s ‘Invisible Symptoms of MS’ was exactly what I needed to read at that time. We all have to find ways to live in our bodies and Ann’s message is right on target.”
So is Cecelia’s.